Thursday, October 7, 2010

I'm just writing to let you know that there is NO cure for Alzheimer's disease. There are some marginally effective treatments to slow it down a bit, but NOTHING that cures it.

I thought you knew this, but obviously you have no freaking clue. Or are just stupid. Or ignorant. Or don't care. Or believe whatever the pfarmaceutical reps tell you.

Patients and families say funny things, and sometimes hear only what they want. So if one makes an odd comment about you, I tend to ignore it. But when I start hearing it from others, and see a trend, then I think differently.

I treat patients to the best of my ability with what I have. In the case of Alzheimer's disease, it isn't much. They all get worse. I tell families that in advance, because reasonable expectations help all of us.

What doesn't help is YOU. Several families have told me that when they say the memory is getting worse, you immediately tell them to return to me "so he can do something about it."

And then, yesterday, a referral from your office showed up on my fax. You'd written: "Please refer back to Dr. Grumpy for Alzheimers. His treatment isn't working, as she keeps getting worse. Needs to change meds to get her better."

I know your handwriting. Now you can't blame your ignorance/stupidity on anyone else.

Being realistic with patients and families is the best treatment for anything. No matter how many times I see them, there are limits to what I can do. But at least I can do better than you in telling them the truth.

45 comments:

It's such a sad disease,slowly stealing loved ones away before finally killing them.People sometimes find that living in an alternate universe about their loved one's disease is easier than accepting the real prognosis....and then some people are just idiots,even doctors

I couldn't agree more. Doctors who mislead patients about prognosis and give them false hope do so much harm.

My 'favourite' is the neurosurgeon who breaks the news to patients that they have a glioblastoma multiforme by saying it's good news, because it's NOT cancer, because it doesn't metastasise. And that the oncologists will give them chemoradiotherapy and it will all be fine, conveniently forgetting to point out that they'll probably be dead in a year or 2 max.

That is so hateful. It's just an awful thing to give people hope. If there was a new trial drug or some new form of treatment, it might be one thing, but to blatently lie to people who so desperately want help is disgusting. One of the most horrible things about Alzheimer's is that so often the body is relatively healthy otherwise. This can cause massive denial issues with not only the patient, but the families. This jerk is allowing them to live in some false world where pills really do make everything better. JERK.

I agree with you. It is very frustrating when someone blames another for their own inabilities. It is yet another thing for a fellow health professional to do so. They are doing nobody any favors by allowing a family to believe there is a cure for Alzheimer's disease.

We may not all be experts outside our own fields, but some basic knowledge is required. And I agree, wholeheartedly, that knowledge of what's to come is far better for the families than lies.

That's one of my main beefs with the oncologists, at least in my neck of the woods. They always take the optimistic view--let's cut out your lung, give you six months of radiation and five months of chemo, which will mean you'll spend six months in absolute hell, but you'll get to live two, maybe three months longer.

Though, my dad has a friend with a child with some unfavorable prognosis brain tumor. She says she doesn't like the neurologists because all she hears from them is about the likelihood of poor prognosis. She prefers the oncologists who are only too happy to give more chemo. They give her hope, she says. It's inhumane, but also I can't imagine how hard this must be for the parent of a child with a debilitating and probably eventually fatal illness.

I don't think you can blame the drug reps for this one. Even the ads on TV say things like "may slow the progression" which anyone with a basic working vocabulary knows does not equal "they will get better."

Wow, so sorry for you and all the specialists and patients who have to deal with passive-aggressive cruelty this. It makes you wonder how this jerk gets through the rest of life. Hit a parked car? Leave someone else's business card on the windshield!

The reasons most docs can't talk to their patients is that most docs.. (grumpy excluded of course) are good at taking tests and doing what it takes to become a doc, not so good at human relations and actually "being" a doc. I have seen so few physicians that could actually communicate well. I think part of the problem is the med school selection process... the other part of the problem is that fewer and fewer people that graduate from school these days are truly "educated"...

Thank You for being honest. I just had a heart to heart with my sister's oncologist who tends to be, in his own words, "overly optimistic." She has stage 4 carcinoid cancer, mets to liver, bones and other organs, and has lost control of her bladder and bowels. She has all but stopped eating, maybe takes three or four bites of a meal on a good day. She fades in and out of lucidity. Her legs are swollen and painful and she cannot stand for more than a couple of seconds even with help. Her doctor told us he was out of ideas to make her better, but instead of recommending hospice, sent her to a rehab unit where she is supposed to participate in physical therapy. My dad and I talked and intervened with him, he finally agreed that hospice was the best idea after the head of the rehab facility told him the same. I don't get it, he's seen this before yet remains, "overly optimistic." We don't need that, we need realistic information.

Maybe the patients harass the heck out of him about it and spend a lot of time on it over and over and over. He may be tired of explaining that it won't get better bacause they never listen, or they get angry or something else. I often have patients that come in month after month with the same complaints for unfixable problems or the fix is not what they want. But they continue to bring it up over and over. I get tired of it. They don't hear what they want so they don't remember the conversation and go back to it hoping they'll get a better answer.

I have discovered that it is often necessary to go to appointments with a specialist I see (and whom I respect and trust a lot in general) and say up front, "I want to know whether there is something I should be doing about this or whether I just need to live with it. If the answer is that I just need to live with it, that's perfectly okay with me." Otherwise I get more and more prescriptions that have less and less to do with the actual (lifelong and progressive) disorder she's treating me for. Someone seems to have convinced her that she needs to appear to be doing something about the presenting complaint whether or not there is anything that can or should be done. It's frustrating. Hope is great and all, but this is my only life, and I'd rather not waste it chasing placebo effects, you know? I have other things I'd like to do before I die.

"........but Dr.X said it can be cured", or "....according to my brother in law.......". People do tend to grasp at any wayward straw they can find to deal with their helplessness in such situations........certainly Dr. Irritating should have worded the referral a little differently though.

Although I am not a doctor, nor do I play one on TV, I suggest that Dr. Irritating has diagnosis of second row down, third column. Probably third stage. I suggest that it be treated with fuckital three times daily and Dr. Irritating may need to be put into a rehab hospital.

Similar issue when the doc told my grandmothers very large brood of 15 sons and daughters that she had carcinoma. You can only imagine the argument when my mother tried to explain it was cancer and they all flatly denied it because it was 'carcinoma' not cancer. Not his fault, but simple words would have avoided the issue. Was he avoiding? I don't know...perhaps he didn't realise how ignorant they were.Kym

To be fair, sometimes the family of a patient, particularly a dying patient, can be overly optimistic or bull-headed about what is actually going. According to my husband, an RN in hospice, this makes properly caring for the dying patient difficult. Some just don't want to deal with the reality of the situation.

Last week guy calls from jail, can you come over and get me out. Go before Judge , he says hasn't even seen the papers don't know the charges, can't set bail until then. Tell the client--who then proceeds to argue with me about why no bail. Cop intervenes tells him Judge hasn't seen papers doesn't know if he spit on sidewalk or killed someone, so no bail until he sees papers. Of course that means it is my fault. Bail is set, at hearing Judge say facing 3 to 5 years if convicted on all charges--guy turns to me and says do something. Later I sit the guy down review the evidence against him and suggest he apply for PTI, a pleaq bargain program, guy leaves gets another lawyer. Did not take the deal and now is in the grinder. Same thing Doc , different line of work--get your magic wand out and start waving it.

I'm all for honesty, and I realize that Neurologists have a hard job most of the time, because you have to tell patients and families of patients things they don't want to hear.

That being said, Dr G, you are the FIRST neurologist I have ever heard of that has any kind of compassion or people skills. My son contracted meningoencephalitis during or very shortly before birth. The virus caused nonstop seizures that they couldn't stop for five days. By then, the damage was done and he was permanently brain-damaged. We spent many hours in the neuro's office the first three years of his life. His neurologist was very obviously brilliant, but had the emotional range of a teaspoon. I had just turned 21, had no life experience, and he told me in all likelihood my child was going to have the cognitive function of an eggplant, he might walk but that'll be iffy, he's apparently legally blind, and oh by the way he has cerebral palsy. Come back in six months. AND LEFT. Didn't send a nurse in to console me or explain what just happened. I remember very vividly that my adorable sweet year old baby was cooing and giggling at me on the exam table and I looked at the smiling baby in front of me, put my forehead on his leg and I cried. And cried. I didn't understand what was going on, but I knew cerebral palsy was VERY BAD.

Like I said, I understand that neuros have a hard job, especially ped neuros, because people are never there for good news, but Neuros as a GROUP aren't the warmest and fuzziest (and this is from personal experience with about 10 different neuros). I want my doctor to be honest with me, but temper it with compassion.

However, even *I* know that Alzheimer's is progressive and doesn't "get better". That doctor is an idiot.

Your sad story is familiar, Ellie. My mother's doctor told her "There can be three outcomes from this surgery. It will completely cure you, it won't make any difference, or you'll die." Without pausing for her to say anything he turned around and walked out of the room. The poor unsuspecting nurse who then came in and asked "Do you have any question?" should have been given danger pay.

Maybe I'm the only one, but I read it completely differently. Many patients are not as compliant as they could be, whether due to financial reasons, or forgetting, or being unable to make appointments or not understanding why they need the f/u appointments etc. I read it as that the referring GP wants to make sure that the patient is doing their part to see you as they should be to make any (albeit sometimes minor) adjustments to their medications/treatment as necessary to ensure the best care possible. I didn't read that at all as dumping on you, Grumpy. Perhaps the doc is unsure if there are any further treatments out there left to try too. Obviously you have more intimate knowledge of this GPs notes and disposition, but from a superficial outsider's perspective, I'm not so quick to agree that he's a bad guy with intentions to mislead/give false hope.

Stop with the generalisations please - some docs are good at this and some are bad. It's really hard to look someone in the eye and tell them they're going to die soon or that they'll never get better. It has to be done, but it's very easy for people to judge it not being done well when you don't have to do it yourself.

Is General Practice same as Family Practice? If so, I can't say as I am surprised. FP doesn't exactly instill a lot of confidence in me when they have patients on my floor. In fact, it is well known amongst nurses that if they are ever brought in for something, and are assigned FP, their coworkers are supposed to stand up for said nurse and get it changed to Internal Med.

On a side note, I want to bang my head on the desk when an Alzheimers patient is admitted with "Mental Status Changes". Mom/Dad is confused. I wonder why that would be??

I hope you sent this doctor some literature on Alzheimers. Lots and lots of literature. Considering the doctor, some pictures may help as well.

i just watched a dear friend pass away who had alzheimer's. it changes the patient, the family and friends to watch someone not even remember their family or even that they loved God.i'm glad their family did not have dr. irritating but had someone who let them and us know the truth.doesn't the family do homework? i trust no doctor to give me all the facts. there are legitimate websites out there that give factual information (for instance i have ESRD and go to kidney.org for info)shame on them for relying only on one doctors info and shame on dr. irritating for leaving you the dirty work.

As an old hospice nurse, ITA with the assessment of oncologists as being "overly optimistic" to the point of lying. I have a theory that Oncs cannot stand "Losing to Cancer" so they fight tooth and nail, ruining any quality of life for a few miserable weeks or months, all because they hate to lose. Most cancer pain and symptoms can be well managed by a good hospice team, leaving the patient able to say goodbye while he has some quality of life (which also saves $$$$ as an extra benefit).

OLD hospice joke: "Why do we nail coffins shut? "So oncologists can't get in that LAST round of chemo!"

My mother recently died from end-stage Alzheimer's - she choked on her pureed foodgoo and developed aspiration pneumonia. My sister - who has a learning disability - is still in shock because, even though my mother had been Zombie!Mom (nonverbal, incontinent, nonmobile, unable to eat on own and had to be force fed) for almost three years, the GP kept saying she was "doing just fine" and convincing her to 'hang on, there are new treatments all the time' and 'she's making progress' - Progress, when Alzheimer's is an incurable condition with a steady rate of decline. When Mom went to hospice with aspiration pneumonia, and I and the emergency docs knew it was endgame and were trying to convince sister of same, GP breezed in, took her pulse with his fingers, grinned at my sister, slapped her on the shoulder, and told her Mom was doing great and should be able to go home in 2-3 days. I could have killed him with my bare hands. I did have him thrown out of the room and not allowed back in.

Instead of letting my mother go that night, peacefully, my sister insisted on taking her home. She was on full o2 100% pressure APAP, IV fluids only, round the clock nurses to turn her and keep her circulation from going bad and a respiratory therapist to suction her when she'd choke. Mom lived another 13 days and the pneumonia killed her before her system could completely cannibalize itself and shut down.

Those were the worst 13 days of my life. That is not hyperbole, that is a statement of fact. Watching her die by centimeters because some goddamn moron of a doctor had to be everybody's buddy instead of being honest about a terminal patient with zero quality of life.. argh.

GP breezed in, took her pulse with his fingers, grinned at my sister, slapped her on the shoulder, and told her Mom was doing great and should be able to go home in 2-3 days. I could have killed him with my bare hands.

Oh, Jesus, when my dad passed we had the same thing going on--his fuckwit internist kept telling my mom that she should keep him on life support, because just a few more days of that and he would snap out of CARDIAC FAILURE. Because when your heart is dead, you just need a little rest and you'll bounce right back! And then at the funeral he was trying to play the wise doctor to me--the only reason I didn't kick him in the balls was because I didn't want to upset the other mourners. Needless to say, this was the same internist who told my dad that his cholesterol was nothing to worry about, because it was genetic.

You know, after reading a lot of this I feel more and more grateful for my family practitioner. She's smart, explains everything, involves me in treatment options, and thinks it's stupid not to be upfront about real outcomes. But then, Dr. Joe Strayhorn, my pediatrician trained me to expect that kind of thing out of my medical team. heh.

Add to that, I come from a family of educators. We know how to research and when someone tries to patronize or pat us on the head...well, let's just say it's a Bad Idea™. I did hear a rumor of certain med schools teaching baby docs on how to communicate well with their patients.

Well, as my favorite aunt used to say, "Someone has to be at the bottom of their class."

That doc sounds totally ignorant of the disease. He reminds me of my mom's friends, etc., who keep telling me they think she's fine. Even her internist doesn't quite get it - and I've been her guardian for nearly a year.

I feel for you. I deal with patients permanently paralyzed from various means.

We don't want to dash hope, but everyone is different. I always tell the new injury people that changes may happen for up to 2 years post-injury. I always stress everyone is different. It is heartbreaking when a SCI patient with a complete injury has potential but doesn't want to live with anything that's not a complete recovery, which in most cases is impossible.

There is no magic wand for predicting who will do what, but your state of mind is a big factor. I work with C6 quads who do more than some T12 paras I work with, and have a more fulfilling life, even though the quads may have a more debilitating injury that physically hampers them.

It's all up to you. Necessity truly is the mother of invention, and I work with some seriously ingenious characters.

See psych consults like this all the time -- patient with well-established diagnosis of vascular or Alzheimers (or probable mixed) dementia sent back for more neuropsych testing (to my psychology colleague) or us because patient "is getting worse over several months."

Now "worse x 5 days" -- I actually like those consults because then I can get the patient the med work-up for delirium and often suggest to the PCP (non-physicians in our system) one of the most effective treatments for the acute decompensation (aka antibiotiics for the UTI or pneumonia).

Not too long ago was seeing a hospitalized patientwith delirium superimposed on dementia. Over 90 years old, had multiple medical problems, MMSE was 1/30.... family was upset that I recommended holding donepezil and galantamine.

When I give a diagnosis of probable dementia, I try to focus on that it IS a progressive disease and that our goals of treatment with the current medications is to try to slow it down. I also frame it in our working together to have as many good days for as long as possible and encourage them (if mild or family if it is more severe) to start planning for what they will do wihen it worsens. It takse more time but families and patients need to hear it, and the fact that I (or a colleague0 will continue to work with them as the patient progresses.

Welcome to my whining!

This blog is entirely for entertainment purposes. All posts about patients may be fictional, or be my experience, or were submitted by a reader, or any combination of the above. Factual statements may or may not be accurate.

Singing Foo!

Have Dr. Grumpy delivered automatically to your Kindle for only 99 cents a month! Sign up here!

Dr. Grumpy is for hire! Need an article written (humorous, medical, or otherwise) or want to commission a genuine Grumpy piece for your newspaper/magazine/toilet paper roll? Contact me to discuss subjects. You can reach me at the email address below, or through my Linked-In profile.

Note: I do not answer medical questions. If you are having a medical issue, see your own doctor. For all you know I'm really a Mongolian yak herder and have no medical training at all except in issues regarding the care and feeding of Mongolian yaks.